Do patients need to know they are terminally ill? No
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f2560 (Published 24 April 2013) Cite this as: BMJ 2013;346:f2560All rapid responses
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Most patients want to know if they are dying. As a practising doctor, I have no doubt that having conversation with patients about prognosis in life limiting illnesses is very necessary to do, if they wish to have this discussion. Although difficult, it is a very rewarding experience, with powerful benefits for the patient and their families. Telling patients that they are dying enables them to exercise control, to put theirs affairs in order, and to resolve issues about their life. It also leads to specific and important health service actions such as documenting preferences and do not do CPR decisions (DNA-CPR), issues that are vital to avoid patient safety incidents. Furthermore, there is a strong professional consensus (1) around the benefits of advance care planning and in the UK, the GMC places a regulatory duty on doctors to help patient plan ahead in end of life care(2)
A frequent complaint from families is: 'I wish the doctor had told us that my mother was dying'. I would urge all doctors to include in their routine, a question about prognosis when a life limiting illness is diagnosed. : 'Would you like to discuss what you can expect and what is likely to happen in the future?' (3)
RCP. Advance care planning. February 2009. Bookshop.rcplondon.ac.uk/contents/pub267-e5ba7065-2385-49c9-a68e-f64527c15f2a.pdf (accessed 2.5.13)
GMC 2010:London Treatment and care towards the end of life: good practice in decision-making. Www.gmc-uk.org/end_of_life.pdf32486688.pdf (accessed 2.5.13)
Workman S. A communication model for encouraging optimal care at the end of life for hospitalized patients. QJM: An International Journal of Medicine 2007: 100 (12); 791-797
Competing interests: I chair The National Council for Palliative Care which hosts the Dying MattersCoalition. We received funding from the Department of Health and NHS England to promote conversations about death dying and bereavement to support improvements in End of Life Care
Leslie Blackhall[1] may face the challenges of a particularly US system, whereby Medicare hospice benefit is usually payable only to those who have been certified by a physician to be terminally ill and to be in the last 6 months of life, and must agree to forgo potentially curative treatment[2]. This places a greater emphasis on accurate prognostication, and takes away the “hope” of potentially curative treatment being offered alongside palliative care. The WHO definition of palliative care is an important point of reference here, as it clearly states it should be provided alongside treatment where available[3]. The joint availability of palliative and curative care then allows us to work with patients to hope for the best, while planning for the worst.
Information is a key need among advanced cancer patients and their caregivers [4], and understandably they wish to control the content and extent of information given to them [5]. However, patients report difficulties in formulating and posing sensitive questions to clinicians without being prompted [6], we must make it as easy as possible for them to ask difficult questions. Their caregivers are often provided with little, if any, information about life expectancy or prognosis [7]. We also recognize that clinicians can feel unsure how much information to provide to advanced cancer patients and their families and when to do so [8], and clinicians report often waiting to be asked [5]. As a result, patients and carers misunderstand the illness [9] which may increase their anxiety, reduce the potential for advance care planning, and increase the likelihood of unplanned admissions. Good communication can alleviate the distress associated with end-of-life [10]. For clinicians, poor communication skills can lead to burnout and distress [11], which are significant predictors of staff sickness absence [12], that may also reduce both the quantity and quality of care provided to patients [13].
The evidence is very clear - a recent survey of citizens in 7 European countries found an overwhelming majority (73.9%) would want to know that they had limited time to live (in this case less than one year was the hypothetical scenario)[14]. For a minority (21.5%) they would only want the information if they ask, or at all. This preference should also be respected. Communication skills are key to determining the amount of information required, and patients and their families are very able to indicate their willingness for full or partial information if enabled to do so. As indicated in Leslie Blackhall’s argument against telling patients they are terminally ill, the true question is how we can provide excellent care to these patients. And in light of the evidence for preferences, excellent care can only be determined by asking what is wanted by those we care for, and not by those who provide it.
1. Blackhall LJ. Do patients need to know they are terminally ill? No. BMJ 2013;346 doi: 10.1136/bmj.f2560[published Online First: Epub Date]|.
2. U.S. Department of Health and Human Services HCFA. Medicare Hospice Benefit. Secondary Medicare Hospice Benefit 2013. http://www.hospicenet.org/html/medicare.html.
3. Organization WH. Definition of palliative care. Secondary Definition of palliative care 2011. http://www.who.int/cancer/palliative/definition/en/.
4. Wenrich MD, Curtis JR, Shannon SE, et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 2001;161(6):868-74
5. Clayton JA, Butow PN, Tattersall MHN. When and how to initiate discussion about prognosis and end-of-life issues with terminally ill patients. J Pain Symptom Manage 2005;30(2):132-44 doi: DOI 10.1016/j.jpainsymman.2005.02.014[published Online First: Epub Date]|.
6. Street RL, Jr. Information-giving in medical consultations: the influence of patients' communicative styles and personal characteristics. Soc Sci Med 1991;32(5):541-8
7. Schulman-Green D, McCorkle R, Cherlin E, et al. Nurses' communication of prognosis and implications for hospice referral: A study of nurses caring for terminally ill hospitalized patients. Am J Crit Care 2005;14(1):64-70
8. Fitch MI. How much should I say to whom? J Palliat Care 1994;10(3):90-100
9. Mackillop WJ, Stewart WE, Ginsburg AD, et al. Cancer-Patients Perceptions of Their Disease and Its Treatment. Brit J Cancer 1988;58(3):355-58
10. Simpson M, Buckman R, Stewart M, et al. Doctor-Patient Communication - the Toronto Consensus Statement. Brit Med J 1991;303(6814):1385-87
11. Graham J, Ramirez A. Improving the working lives of cancer clinicians. Eur J Cancer Care 2002;11(3):188-92
12. Borritz M, Rugulies R, Christensen KB, et al. Burnout as a predictor of self-reported sickness absence among human service workers: prospective findings from three year follow up of the PUMA study. Occup Environ Med 2006;63(2):98-106 doi: DOI 10.1136/oem.2004.019364[published Online First: Epub Date]|.
13. Michie S, Williams S. Reducing work related psychological ill health and sickness absence: a systematic literature review. Occup Environ Med 2003;60(1):3-9
14. Harding R, Simms V, Calanzani N, et al. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psycho-Oncology. In Press
Competing interests: No competing interests
In the famous Greek mythology story of Pandora's box, after the box was opened illness, pain and even death were unleashed. It was only later that the intervention by a physician - and what a physician, Asclepius, a semi-god! - was able to remedy all these evils. Indeed, the box was closed when it was too late, only hope (which is, after all, the last thing that dies in a person) was left at the bottom of the box.
Therefore, classical Greek mythology considered hope as an essential part of the life experience of every person. Illness, pain, death are also parts of human existence, of the vase, but they need to be unleashed and made manifest in the external world, discussed, processed and possibly overcome with the help of specialists who can provide those who are ill, suffer and are destined to die with the necessary information so that they will be able to make choices that are consistent with the way they envision life. Conversely, hope needs to remain confined inside that special box that is "the self", untouched by any kind of manipulation, even if that manipulation it is for therapeutic purposes. Indeed, the fear that hope will fly out of the box leaving humanity struggling with despair is so high that Asclepius, a semi-god of Medicine, has to limit his intervention only to what came out of Pandora's box, without touching what was left inside, i.e. hope.
In terminally ill patients, hope - which is false only in the eyes of those who provide care to them from outside – is the cane they can lean on to take the last steps down the road of existence.
Indeed, a great Russian writer offered a very effective portrayal of the theatrics surrounding a terminal patient in a famous passage of the short story entitled “The Death of Ivan Ilyich”, that we wish to quote: "Ivan Ilyich saw that he was dying, and he was in continual despair. In the depth of his heart he knew he was dying, but not only was he not accustomed to the thought, he simply did not and could not grasp it [...]. What tormented Ivan Ilyich most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill […] This deception tortured him—their not wishing to admit what they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie [...] And strangely enough, many times when they were going through their antics over him he had been within a hairbreadth of calling out to them: "Stop lying! You know and I know that I am dying. Then at least stop lying about it!" But he had never had the spirit to do it”. (Tolstoy L., The Death of Ivan Ilyich, 1886).
Ivan Ilyich knows that he is dying. He knows that everyone knows. He wants to shout and tell everyone to stop lying but does not have the courage to do it because in that case he would admit to himself that he has lost all hope (of survival), and the strength to face his final days along with it.
Patients nowadays are bombarded with information. When terminally ill cancer patients enter into a structure called “Hospice” or “Center for Palliative Care” they already know in their hearts at what stage their illness is. And so what is the purpose of providing them with the crude details about future survival intervals?
The goal of palliative care is to relieve suffering: to take someone's' hope away, which would be the inevitable consequence of overly bureaucratized information, is one of the worst forms of suffering that can be inflicted to a person.
To imagine that, in order to abide by the sacred principle of patient autonomy, we have to stop fulfilling our most important mission as physicians which is to avoid causing suffering (primum, non nocere) means to believe that there is no difference between a physician and an anchorperson who reads out the names of the people who died in a terrorist attack during the news to fulfill his/her duty to inform the public, without waiting to be authorized by law enforcement authorities. However, if we look closely, there is a substantial difference: when facing an anchorperson who behaves in such a way, those to whom the information is destined do have a remote control with which they can change channel.
Competing interests: No competing interests
I think both answers are correct, and it is not helpful to polarise the discussion. The awareness of both patient and doctor that they are dealing with a terminal illness is usually part of a narrative that starts with diagnosis and ends with death. At different points along the way ideas about disease progression and trajectory change, and symptom control (which may involve palliative treatment) becomes more important as curative treatment becomes less effective.
Sharing information and ideas happens gradually, but sometimes patients and their families have different health beliefs and do not appear ready to accept the message being offered. This can be respected rather than challenged. There is always uncertainty along the way, and doctors do not have a monopoly on the truth. Communicating a terminal prognosis can be handled with sensitivity and compassion and is more about the patient understanding what is happening to their body and its consequences rather than giving a label.
Competing interests: No competing interests
The author makes some interesting points regarding the disclosure of prognostic information and 'terminal' status. I appreciate the sentiment that the focus should be on offering the best possible care rather than on offering patients 'false' choices. However, the non-disclosure of prognostic information has significant negative implications for decision making, and signifies a worrying decline into medical paternalism. Palliative and end of life care are often discussed synonymously with the care of patients suffering from incurable cancer, yet we are faced with a growing population of patients dying from non-malignant causes, who require equal consideration with respect to care provision and information disclosure. Evidence suggests that patients with non-malignant conditions such as COPD harbour considerable concerns around the process of dying and the manner of death, as a direct consequence of a lack of information about disease progression and prognosis (1). It is imperative that we do not lose sight of the needs of patients such as these in the face of a debate that is largely focused around cancer specific issues.
1. Gardiner C, Gott M, Payne S, Small N, Barnes S, Halpin D, Ruse C, Seamark D. (2009) ‘Living with advanced chronic obstructive pulmonary disease (COPD): Patients concerns regarding death and dying’ Palliative Medicine23(8) 691-697
Competing interests: No competing interests
I was diagnosed with anal cancer in 1986 and received a radium needle implant. 18 months later it was discovered that the cancer had spread and I had a colostomy. A year later I was diagnosed with carcinoma in situ of the cervix, but a cone-biopsy was aborted on account of my uterus being displaced and inaccessible vaginally. Whilst still having tests for the latter, I developed secondary bone cancer and my pelvis started to fracture. Treatment of radiotherapy, surgery and chemo followed. That completed, I was called back to see the consultant, who told me to call my partner in from the waiting room. Bad sign, as this meant it would be bad news for which I may have needed support.
The consultant told me they had done everything they could, then he added, 'but I know you, Pat, and how you coped with your first diagnosis (five years earlier), so it's up to you now!' I knew what was implied, but he had thrown down the gauntlet and I accepted the challenge. That was 1991. As far as I am concerned, he got it exactly right. If he had told me to go home and put my affairs in order, I think I would probably have curled up and died.
In 1994 my father was told he was terminally ill with prostate cancer. He immediately took to a wheelchair, yet danced with me at my son's wedding three years later - and then went back to his wheelchair! He died at 89, three years after the wedding, from an infection he picked up in hospital, after being admitted for something totally unrelated. I believe that without being told he was terminally ill, he would have been walking around for much longer.
Competing interests: No competing interests
Re: Do patients need to know they are terminally ill? No
I do not disagree with anything that Dr. Lakhani and Dr. Harding have said. I believe all patients with incurable cancer should be told that their cancer is incurable. However, patients with incurable cancer may live for years, and benefit from many treatments before eventually dying of their cancer. Are patients with metastatic breast cancer terminally ill when they are working full time and responding to chemotherapy? Are they also terminally ill when confined to bed needing help with most activities of daily living? If terminally ill describes both stages, how does that term help the patient make decisions?
In order to help our patients, we need to focus on being truthful about the limitations of our ability to treat their disease, rather than on imprecise guesses about how long they have to live. Cancer patients who are truly terminally ill, who are in bed more than half the time and need help with most of their activities of daily living, may need to know that they are approaching the end of life, but mostly they need to know that in their current state chemotherapy is not going to prolong their life. This is the type of truthful information we almost never give them.
Competing interests: No competing interests